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Monday, September 10, 2012

My Anger as a Parent of a child with cancer

People say that Grief comes in stages well i guess im at the anger stage and im not sure ill ever be over it, im angry my child has cancer,im angry there is No funding for pediatric cancer,im angry that she has spent the majority of her 6yrs on earth in a hospital room hooked up to machines and tubes and im so fucking angry that once again we are being told that there may not be a chance for her to grow up!!!I have so much anger weighing me down that i dont know how i stand up some days and yet i go on and i smile and act like life is perfect because thats what she needs to me do.I help her goto the bathroom while she cries in pain because once again her stomach has been cut open to remove a tumor that's killing her and im so angry that after all that the docs say they dont think there is anything else they can do surgically to help her,im angry that if she doesnt have a certain gene that will put her onto a clinical trial that i have to make the decision on whether or not to put her through more hell or let her come home and enjoy what time she has left with us...there is so much anger its eating my soul...im angry that i may have to tell one child she is going to die and im angry that i may have tell her little sister that one day her big sister will be gone and she wont ever be coming back..i am so Angry that Cancer is stealing ALL OF OUR LIVES...it's killing my baby and stealing the rest of our souls as we watch her suffer....there are so many people that say they are praying for her and i should believe in miracles and that god will find a way and you know what?? THAT PISSES ME OFF BECAUSE WHERE ARE THEY.....are they here watching her suffer and die? NO they are behind computer screens and hiding in there homes instead of coming to see her because they cant handle this , they cant handle seeing her sick or in pain, they cant deal with the fact that she may die BUT they all want to have an opinion on what we should do and how we should handle the news and what treatments we should or shouldnt do and ya know what FUCK everyone that doesnt think i have done the right thing till now or doesnt like the decisions i will make about her future because i swear to All that is Holy if one person tells me i am giving up because i decide to let her have quality of life instead of quantity so help me i will end them......NO PARENT SHOULD EVER HAVE TO LOSE THERE CHILD TO THIS HORRIBLE SOUL SUCKING DISEASE OR HAVE TO JUSTIFY THERE DECISIONS FOR THERE CHILD TO ANYONE...Believe me we will have to live with whatever decisions we make for the rest of our lives and they will eat us alive everytime we think what if....I wouldnt wish this hell on my worst enemy...i wouldnt wish this hell on the terrorists that attacked our nation on september 11th, even though they deserve to suffer for everything they put our country through they still wouldnt deserve this...Cancer is a form of terrorism as far as im concerned,it attacks when you least expect it and it tears huge holes in the structure/foundation of your life....Besides the anger i have so much Fear...I fear i wont be able to be strong enough when she needs me to, i fear i wont be strong enough to still be a good parent to her sister if i lose her,i fear that i will lay down and die without her because she is the best of me and i dont know how to life without that part of me...Audrianna was my miracle baby that i waited 14yrs to have..she came early and fought for every breathe and then when she was finally well she was diagnosed with cancer and has literally fought from her first breathe to be here and LIVE...and i cannot understand why she has had this fight and why she has to continue to fight other then the fact that she has taught me and so many others how to be strong...i would never say i love one of my children more then the other because i dont...i love both the girls so much and i cannot imagine my life without one or the other they have both been true miracles and blessings to me and my biggest fear is that i will lose them both if audrianna dies...i feel like Kyra will hate and resent me for the rest of her life because she will blame me for her sister leaving and spend the rest of her life in therapy for the things i as her mother couldnt fix....so between the anger and the fear right now i feel like im drowning and i might never be able to swim to the surface again....i have always been there for everyone else and always been the strong one and right now i just feel like im cracking in half and i dont know how to put the pieces back together to stay strong for the people who need me...im starting to feel like humpty dumpty and i fear the pieces may never be put back together again....please hug your children tighter tonight and always remember to tell them that you love them even when they are being so bratty you want to lose your mind because you never know if there will be a tomorrow to say those words to them!

10 comments:

I just wanted to let you know I think you're making all the right decisions for all the right reasons. Neither of my children have cancer, but my son does have a genetic disorder that is causing bone marrow failure and has caused him to be tpn dependant. So we're in and out of the hospital a lot and I'm faced with a lot of hard decisions and will eventually have the hell or home decision as well. It makes me feel a lot better to know I'm not the only mother that feels quality is more important than quantity. I think you are an amazingly strong mother. I really do hope they can figure out more to do for her. You guys are in my thoughts. Keep staying strong for your girls. : )

I, too, struggle with my daughter's cancer as well as my own mental illness, bipolar disorder. The most helpful thing I have found was a cancer moms support group. I think all of us moms feel the way you do, but we try to be strong and put on a good front. Thank you for being so brutally honest about your fears and your anger. If you ever want to talk or need support, other cancer moms are out here for you. We can all help to hold each other up so that we can be strong for our beloved children. You said that you love your kids the same, but I think that when your child's life is threatened on a daily basis, you love them in a deeper and different way. Don't beat yourself up...you are doing the very best you can in an incredibly stressful time. You are a great mom!

Wish I could take the pain the hurt and the cancer away. I wish I had some amazing words for you. I pray for audrianna and your family constantly. The families you meet when you have dealt with this sickening beast become your own, even if only in thought and words. The ignorant minds out there make me sick. Praying for you and sending all I have in my heart to you.

You aren't making any bad decisions. It just seems that way because of the possible fate Audrianna and your family faces in the future. Sadly, I'm afraid there are no words I could say to help ease your pain as I don't have kids. But as an adult diagnosed with a life threatening autoimmune disease as a child, I understand where your frustrations come from... from a child's standpoint. My mother made plenty of difficult decisions to manage my health care. Audrianna will understand that as well. She knows. Be open and honest with her. Let her know that you're scared, but also show her that you're strong enough to help her get thru the next phase. Good or bad. Kyra may not understand right now as she is young. However, I feel she won't resent you for your decisions. Have Audrianna write Kyra a letter. Read it to Kyra and let her know her big sister is always around should the worst happen. It may benefit everyone for grief counseling. Even while Audrianna still fights. But that's totally up to you. My heart bleeds for Audrianna and you and your family. I simply cannot imagine what you have to go thru. My heart is with you my friend. <3

If anyone comments towards you making the wrong choices, they have no right to even be acknowleged. You have gone through so much, as has Audriana and Kyra. And to some extent, you might be right about some hiding behind computer screens because they can't handle the reality of it.

But, you also need to realize that you arent seeing the things that those of us out here ARE doing. From the day I learned about Audriana, Gabby, Oliver, Lane, Guilianna and many others, I have been spreading the word that we need to fight for more money being dedicated to research. I've enlisted the fire department I belong to and we are spreading the word here as well....with support of our Chief. And, I plan to spearhead that becoming an event we do all the time. On behalf of Audriana, and all the other kids going through this horrible nightmare.

Believe me, if I had the money to fly out and visit you all, I would. But not all of us are hiding and ignoring things, and I know I never will now that I have learned aobut kids like Audriana.

You are loved....and supported, even by those of us who can't be there physically. And no matter what ANYONE says, you have the right to be angry, scream, cry, and whatever else you need to do. You truly are a woman who is stronger than anyone I know.....and you ARE a great mom, and will continue to be...no matter what happens, because that is who you are.

Even if you doubt yourself, I dont doubt you...I know you will fight forever....for both your precious girls. And they, and we, love you!

Your story is so touching and I can't even begin to imagine what your family is going through. I'm so very sorry for the pain, no child should have to suffer like that and no mother should have to watch her child suffer. Cancer is an icky disease that has stolen many family members from me. I hate it with every thing inside me. I don't know you, but had to post a comment to let you know that I am praying for you and your sweet angel. Her story brings tears to my eyes and deeply touches my heart. Gob bless you and your family. May he give you strength and guidance in this time of suffering. May he heal this little girl and there be no more pain.